This patient reflects on the background to her cardiomyopathy, possible contributory factors, and the ways in which she has come to terms with it

My journey started last autumn at work. Feeling “off colour” and nauseous, I went to my local accident and emergency department. It was quite amusing because they took my temperature and it was so low they asked me, “Are you alive?” I was admitted to the Royal Sussex County Hospital and stayed there for two months, during which time I was diagnosed with cardiomyopathy.

I had been aware that my physical strength had been diminishing. Previously, I had always been the one to stride out in front; yet when walking with my mother lately I had been unable to keep up. It was unfortunate as the cardiomyopathy came just when I was starting to get my life together. I was at my fittest and I was eating better. I was riding my bike and was running marathons. But the cardiomyopathy had been lying dormant for a while.

Feelings of guilt

The doctors asked me lots of intrusive questions, which didn’t help my feelings much; they implied that I drank a lot. They thought I was drinking half a bottle of gin a day. Subsequently, I found I was the only person of whom they asked these questions about my alcohol intake. It went round the ward like wild fire, and the nurses suddenly labelled me an alcoholic. Obviously I felt guilty about the whole thing; I’d brought it on myself. I was probably drinking about three bottles of wine a week. I really had cut it down, as previously I was drinking a bottle of wine a day. I knew I did have a problem and it had been ongoing for a number of years. I think they forget that I’m a child of the ’80s, so no one was telling us how much to drink or smoke. I keep trying to justify my cardiomyopathy; it may have been the drinking—that certainly contributed to it—but there are other possible reasons, too. It could have been a viral illness. But there’s more guilt when it’s related to alcohol, at least for me as a woman.

I feel guilty about drinking because it’s limiting my life. It’s brought me to the situation I’m in now. After I had my pacemaker put in I had a stroke. I have very little understanding of what happened, but the doctors wanted to go down the same path of believing it was my alcohol intake because it was convenient; it was a good way to label me again. Everybody took the doctors’ word, not my word.

My ugly side

After the stroke my left hand and leg were affected. So along with my breathlessness I now had an ugly side. Ugly is a strong word. My self image is no longer my own. It’s not me anymore; it’s tubes and tablets. I don’t look in the mirror anymore; the girl I see looks out with eyes that look ill. I don’t look nice. My body has changed so much. Previously I was tall and quite athletic looking; now I’m small and I have to ask people for help with everything.

Coping and accessing support

They told me it was my heart, but it actually made no difference to me, I’m quite a laid back person. I wasn’t aware of a support group. You don’t get any support until they discharge you; which is odd. I could have used the support earlier. I’ve had three heart failure nurses because I’ve moved wards so much; I’ve not built up any sort of relationship with them. It might have helped if I’d had the same heart failure nurse throughout.

If I could give advice to someone with cardiomyopathy I would tell them to keep a notepad because doctors talk very fast, especially men. In terms of coping, I would suggest watching lots of television and being prepared to relinquish control to your carers as you will be stuck in bed, unable to do anything. I laugh with my mum and friends because I’m classified as disabled and get the best seats on the bus and concessions at the cinema.

I was told originally that I had six months to live but I’ve gone past that. In hospital my next of kin were called as the doctors didn’t think I was going to make it, but I was never going to let that happen. I haven’t really discussed it with my family but I suppose I should be thinking about my funeral. Night times can be especially scary as you start to ruminate about what’s happened in the day.

I wonder where this year has gone and realise that I’ve spent it largely in hospital. It has been the most boring period of my life.

A psychiatrist’s perspective

I was asked to see Liana by her cardiology team, who had concerns that her mood was low. I introduced myself in my habitual manner, as a psychiatrist who works in the general hospital and who specialises in the interaction between physical and mental health. At first, Liana seemed unenthusiastic about speaking to me and immediately said that she didn’t want to talk about death, so we didn’t, though I think that for both of us death was the elephant in the hospital bay. However, that did not mean that we talked about unimportant matters. Liana spoke eloquently about the blame that she experienced, particularly from the medical profession, which made her angry; and about feeling guilty that perhaps she was indeed to blame for her condition—both for the cardiomyopathy and the subsequent stroke. She had been a moderately heavy drinker but thought she had reduced her alcohol intake to a level that was compatible with good health.

It was interesting to note her comments about how better continuity of support from professionals might have helped. She expressed her sadness at the sudden and unexpected loss of her youthful energy and hope for the future. In terms of how she coped, she began by telling us she was “laid back,” suggesting to me that this attribute had helped her come to terms with her condition. Importantly she spoke about the importance of being able to relinquish control—that she now was unable to do very much and was reliant on others. However, her determination to survive longer than her original prognosis was also evident, and her strength of mind was in large part getting her through this. I was surprised by how, in her heart, she perceived her whole self as “ugly” and not just the appearance of her claw-like paralysed hand. I was struck by her dignity and beauty, and her ability to describe her experience with such clarity. Her sad tale was interspersed with moments of real (often black) humour.

Jackie Gordon

A cardiologist’s perspective

Cardiomyopathy is disease of the heart muscle that results in abnormal cardiac function. Patients can experience a range of symptoms according to the degree of cardiac dysfunction: from being completely asymptomatic to experiencing major health problems such as heart failure, increased risk of thromboembolism, and sudden cardiac death, commonly the result of arrhythmias.

There are various forms and causes of cardiomyopathy. The commonest form is dilated cardiomyopathy, in which the left ventricle or both ventricles are dilated with impaired contraction. Causes of this condition include ischaemia, excessive alcohol intake, thyroid disorders, and valvular lesions. Management is often concerned with treating the underlying cause. Accordingly, clinicians often have to ask many questions to help differentiate what may have led to the cardiomyopathy. This may explain why our patient perceived the doctor’s behaviour as probing and prying. Liana was referred to the Royal Brompton Hospital in London for a second opinion. While she was there cardiac transplantation was discussed; she was not a candidate for cardiac transplantation because of her alcoholic liver disease (although she had been abstinent for some time) and the substantial residual functional impairment from her stroke.

Other management options are largely symptomatic and are principally directed towards treatment of developing heart failure; and the prevention of thromboembolism and sudden death. If patients are identified as being at high risk of major arrhythmic events, implantable cardioverter defibrillators should be considered as they are useful in preventing sudden death. Seventy per cent of patients with dilated cardiomyopathy are dead within five years. Prognosis depends largely on the degree of heart failure and the impairment in ventricular function.

Kathy Webb-Peploe

Useful resources

British Heart Foundation (www.bhf.org.uk)—Provides information about cardiomyopathy. Publications also available

Cardiomyopathy Association (www.cardiomyopathy.org)—Provides information and support for the different types of cardiomyopathy. Telephone helpline: 0800 018 1024

Notes

Cite this as:BMJ 2009;339:b4210

Footnotes

This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley (plapsley{at}bmj.com) for guidance.

Unfortunately Liana Daley died a few weeks before publication, but we know she was pleased to have contributed.

Contributors: LD wrote the main text, with help from CW; JG and KW-P wrote the text in the boxes.

Competing interests: None declared.

Provenance and peer review: Not commissioned; not externally peer reviewed.